Impact of the COVID-19 pandemic on neuromuscular rehabilitation setting. Part 2: patients and families' views on the received health care during the pandemic.

This study explored views of users with muscular dystrophies and their caregivers on staff-user relationships and the treatments provided by a Rehabilitation Centre during the pandemic. Patients and relatives were asked to anonymously complete an open-ended questionnaire exploring their views on these aspects. Fifty-four patients and 40 caregivers gave their informed consent and participated in the survey. Fifty-three patients were adults, 28% suffering from Duchenne/Becker muscular dystrophy. Patients reported 269 comments on health care services provided during the pandemic, 132 (49%) concerning positive aspects and 137 (51%) negative aspects. The prompt restart of the rehabilitation therapies and the staff closeness over the pandemic were the practical aspects most frequently appreciated (46.9%), while closer family contacts and the perception of being able to rely on the Centre's constant support were the most cited psychological aspects (53.1%). Architectural barriers, difficulties in accessing public health services, economic difficulties, and lack of support from welfare and other agencies were the practical critical points most frequently reported (89%). In addition, social isolation, and loneliness due to fear of contagion were the most negative psychological aspects (10.1%). As regard the caregivers' views, participants reported 151 comments. Of these, 86 (56.9%) were positive and 65 (43.1%) were negative. Among the positive aspects, the psychological ones - such as closer family contacts, not feeling abandoned and counting on the constant Centre's professional support prevailed (53.5%). As for the negative aspects, most caregivers (92.6%) believe that the pandemic exacerbated their financial and bureaucratic difficulties, particularly in poorer families.

Impact of the COVID-19 pandemic on rehabilitation setting. Part 1: professionals' views on the changes in routine care provided by a rehabilitation centre for patients with muscle diseases.

The outbreak of COVID-19 has forced the health care system to undergo profound rearrangements in services and facilities, especially during the periods of lockdown. In this context, inpatient and outpatient services had to rethink and reorganize their activities to meet the needs of severely disabled patients, as those affected by Muscular Dystrophies (MDs). We present the preliminary results of a survey aiming to explore the staff views on the changes in the care provided by the Gaetano Torre Rehabilitation Centre, and, the impact of these changes on professionals, patients and their families. The survey was carried out using an open-ended questionnaire including six-items, on the practical and psychological aspects emerged during the pandemic in relation to the healthcare services provided by the Centre and to the patients/caregivers conditions. The participants, most of them physiotherapists, highlighted 169 aspects emerging in the pandemic, 48.5% referring to the resources used to cope with critical issues and 51.5% concerning the difficulties encountered. Emotional aspects prevailed on practical aspects both in resources (52.4 vs 47.6%) and in difficulties (57.5 vs 42.5%) categories. In particular, with regard to patients' resources, psychological benefits, despite the burden, were greater than practical ones (87 vs 13%), in the form of improved intra-family relationships, feeling more cared for, and satisfaction for the received care. As for the patients' relatives, the staff indicated more resources than difficulties (72.8 vs 17.2%). Among the former, 75% concerned the emotional sphere, such as the perception of having a point of reference even in such a difficult time.

Psychosocial burden and professional and social support in patients with hereditary transthyretin amyloidosis (ATTRv) and their relatives in Italy.

BACKGROUND: Hereditary transthyretin amyloidosis (hATTR), alias ATTR variant (ATTRv) is a severe and disabling disease causing sensory and motor neuropathy, autonomic dysfunction, and cardiomyopathy. The progressive decline of patient's functional autonomy negatively affects the patient's quality of life and requires increasing involvement of relatives in the patient's daily life. Family caregiving may become particularly demanding when the patient is no longer able to move independently. This study is focused on the psychosocial aspects of ATTRv from the patient and relative perspectives. In particular, it explored: the practical and psychological burdens experienced by symptomatic patients with ATTRv and their key relatives and the professional and social network support they may rely on; whether burden varied in relation to patients' and relatives' socio-demographic variables, patients' clinical variables, and perceived professional and social network support; and, any difference in burden and support between patients and their matched relatives. METHODS: The study was carried out on symptomatic patients included in the ATTRv Italian national registry and living with at least one adult relative not suffering from severe illness and being free from ATTRv symptoms. Patients and relatives' assessments were performed using validated self-reported tools. RESULTS: Overall, 141 patients and 69 relatives were evaluated. Constraints of leisure activities, feelings of loss and worries for the future were the consequences of ATTRv most frequently reported by patients and relatives. Both in patients and their relatives, the burden increased with the duration of symptoms and the level of help in daily activities needed by the patient. In the 69 matched patient-relative pairs, the practical burden was significantly higher among the patients than among their relatives, while the psychological burden was similar in the two groups. Moreover, compared to their relatives, patients with ATTRv reported higher levels of professional and social network support. CONCLUSIONS: These results show that ATTRv is a disease affecting quality of life of both patients and their families. Supporting interventions should be guaranteed to patients, to facilitate their adaptation to the disease, and to their families, to cope as best as possible with the difficulties that this pathology may involve.

Views of Catholic Priests Regarding Causes, Treatments and Psychosocial Consequences of Schizophrenia and Depression: A Comparative Study in Italy.

This study explored views of Catholic priests about schizophrenia and depression in Italy. Participants completed a questionnaire on their views about either schizophrenia (N = 282) or depression (N = 277). The depression group was surer than the schizophrenia group that: the disorder was due to psychosocial causes; curable; non-requiring long-term pharmacotherapy; the persons with depression could participate in religious activities. The older priests were more convinced than the younger priests that: the prayer and long-term pharmacotherapy are useful; the persons with mental disorders had affective difficulties, are recognizable and kept at distance. Priests should receive education on stigma in mental disorders, particularly schizophrenia.

The beliefs of non-psychiatric doctors about the causes, treatments, and prognosis of schizophrenia.

OBJECTIVES: To examine the causal beliefs about schizophrenia of non-psychiatric doctors and whether differential belief in biogenetic vs. psychosocial causes influences doctors' views about treatments and prognosis. DESIGN AND METHODS: Three hundred and five non-psychiatric doctors working in outpatient community centres completed the 'Opinions on mental disorders Questionnaire' after reading a clinical description of people with schizophrenia. RESULTS: The factors most frequently reported as causes of schizophrenia were heredity (65.2%) and use of street drugs (54.1%). Seventy-five per cent of participants endorsed both one or more biological causal factors and one or more psychosocial causal factors. Of the 264 participants who expressed their opinion about the most important cause of schizophrenia, 53.8% indicated a biogenetic cause. Fifty-two per cent of respondents thought it 'completely true' that drugs are useful in schizophrenia, and 33.9% thought it 'completely true' that people with schizophrenia must take drugs all their life. Participants stating that the most important cause was biogenetic more frequently recommended a psychiatrist and less frequently a psychologist. Compared to doctors who indicated a psychosocial cause as the most important one, those who indicated a biogenetic cause were more sceptical about recovery, more confident in the usefulness of drugs, and more convinced of the need of lifelong pharmacological treatments in schizophrenia. CONCLUSIONS: These findings suggest the need to provide some doctors with training on the multiple, interacting causes of schizophrenia and the efficacy of the broad range of available treatments. The education of health professionals regarding stigma and its effects on clinical practice is also needed. PRACTITIONER POINTS: Viewing schizophrenia as mainly due to a biological cause is associated with greater confidence in the usefulness of drugs, higher belief in the need for lifelong pharmacological treatments, and greater prognostic pessimism. Belief in a biologically oriented model of schizophrenia may lead doctors to underestimate the value of psychologists. Prognostic pessimism among doctors may negatively influence clinical decisions, the information doctors provide to their clients, and clients' own beliefs about their chances of recovery. Belief in the need for lifelong pharmacological treatments in schizophrenia may lead doctors to resist drug withdrawal in case of severe side effects.